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Thread: Adenomyosis??

  1. #1
    ICN Member
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    Adenomyosis??

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    Hi Everyone,

    I have not posted for awhile, but still lurking about . I have luckily had my IC under control lately, but have developed some other issues. About 4 years ago I was dx with having Uterine fibroids( biggest one being 2.3cm). Well fast forward to about 4 months ago, I started getting this severe lower left pelvic pain which was like a sharp shooting pain that would radiate down the front of my left thigh. It would come on right after my period ended and also near ovulation. The pain would be so bad I could not sleep or even get comfortable. It sent me to the ER once it was so bad. I thought I ruptured a ovarian cyst. The pain when it comes, lasts for like 3 to 4 days then gets better. I had Ultrasounds which only showed the small Fibroids. My gyne has not been much help. Well last week I went to see a Physio specialist and told her about the pain I was having. She ordered an MRI of my pelvis and it showed I have something called Adenomyosis. My periods are pretty normal( every 28 days), but last month my period was off. I thought maybe it was from some extra stress I was dealing with, but not sure now. Last month my period just was different in pattern. I usually have nasty cramps for the first 2 to 3 days with normal flow and then it kind of just bleeds lightly and spots for the next 4 days then it's done. Well last month it started out slow, like only light spotting for first two days and then heavier on the third with gushing. It also lasted a bit longer and what was really odd was I continued having cramps even when my period was done. I was also having some blood tinged Mucous that would come out from time to time for a few days after my period ended. That also happens when I am near ovulation for a few days too. Now my period is due Monday, but I am already feeling cramps coming on now( which is odd). I have an appt with my Gyne on Monday to get her take on this. I am going to probably look for a different gyne though. This one seems to want to push BC pills on me. I am 43 yrs old and feel it is too risky at my age and for the risk of blood clots. I also never tolerated the pill whenever I took it in the past. I am super chemical sensitive so that is not really an option for me, yet she seems to want to keep pushing it. Anyhow, from what I have read, the only cure for adenomyosis is Hysterectomy. I am leary of surgery because I am fearful it will wake up my IC and make it worse as pelvic surgery has a tendency to do this. I mean it can cause IC in healthy women. Does anyone else here have Adenomyosis and what are your symptoms? I can deal with pain at this point, but could NOT deal with dysfunctional bleeding and heavy prolonged bleeding. I pray that does not happen. Just wanted your input. Thanks.

  2. #2
    ICN Staff ICNDonna's Avatar
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    Re: Adenomyosis??

    I wonder if this is part of your pre-menopause? I googled adenomyosis to look at treatment options and it looks like the options for treatment are petty much either hormones or surgery, with ablation the least invasive. If it's your introduction to pre-menopause, you might want to just treat the symptoms and wait --- and even if you need hormones during this time, that could be a temporary thing. Sometimes we have to look at the potential for benefit against the possibility of side effects, then make a decision about treatment.


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  3. #3
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    Re: Adenomyosis??

    Hi Donna,

    Thank you for the reply. Yes, I am definitely looking into the other treatments available. I am 43 years old so according to my gyne I am not near menopause. I wish i could be in menopause right now!!! They say this gets better once women reach menopause, but can wreck havoc until then. I am seeing the gyne on Monday and will see what else she can suggest. Thanks.













    Quote Originally Posted by ICNDonna View Post
    I wonder if this is part of your pre-menopause? I googled adenomyosis to look at treatment options and it looks like the options for treatment are petty much either hormones or surgery, with ablation the least invasive. If it's your introduction to pre-menopause, you might want to just treat the symptoms and wait --- and even if you need hormones during this time, that could be a temporary thing. Sometimes we have to look at the potential for benefit against the possibility of side effects, then make a decision about treatment.


    Donna

  4. #4
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    Re: Adenomyosis??

    Hi there! I was just diagnosed with Endo today. From my understanding, adeno is a subtype if Endo. I would definitely suggest going to a different doctor, trying as many as you can until someone is on your side and you feel comfortable with their treatment route. I went to what felt like a million doctors for the last five years, esp in the last 6 months until I found one that I trusted and believed my pain.

    I know you said you want to avoid bc, but have you tried a Mirena iud? I know Endo and adeno are different, but Mirena had worked wonders on my period and I think it's used for adeno as well. Off bc, I would start a new cycle every 7-10 days. As soon as it was inserted, my periods vanished. It hasn't helped the pelvic pain, but at least I don't have to deal with periods and IC. I was on regular bc pills that did nothing, and actually got a couple of varicose veins from them, so I totally get your aversion to them.

    I would also ask about hormone therapy. Gonadotropin something or other. I think it inhibits the growth and reduces the size of the implants.

    Best of luck to you! Hope you start feeling better soon.

  5. #5
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    Re: Adenomyosis??

    Thanks for the reply and suggestions, I appreciate it. I am not a fan of IUD's. I have a lot of pain down there as it is and read it can make things worse. My gyne told me that with the IUD, it can go both ways, it can stop your periods or it can cause you to bleed all the time. Ugh, no thank you. Also I am high risk for UTI's and very prone to them and was told they can cause UTI's for some women( especially if your predisposed to getting them). Ugh, but yes, I do not blame you for trying it, I mean bleeding all the time is Not something I can deal with. Now what is hormone therapy ( Gonadotropin)? How does it work?




    Quote Originally Posted by Ladav View Post
    Hi there! I was just diagnosed with Endo today. From my understanding, adeno is a subtype if Endo. I would definitely suggest going to a different doctor, trying as many as you can until someone is on your side and you feel comfortable with their treatment route. I went to what felt like a million doctors for the last five years, esp in the last 6 months until I found one that I trusted and believed my pain.

    I know you said you want to avoid bc, but have you tried a Mirena iud? I know Endo and adeno are different, but Mirena had worked wonders on my period and I think it's used for adeno as well. Off bc, I would start a new cycle every 7-10 days. As soon as it was inserted, my periods vanished. It hasn't helped the pelvic pain, but at least I don't have to deal with periods and IC. I was on regular bc pills that did nothing, and actually got a couple of varicose veins from them, so I totally get your aversion to them.

    I would also ask about hormone therapy. Gonadotropin something or other. I think it inhibits the growth and reduces the size of the implants.

    Best of luck to you! Hope you start feeling better soon.

  6. #6
    ICN Member Mothergoose's Avatar
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    Re: Adenomyosis??

    Hi a bit late but I had adeno, symptoms started in my mid 20's, IC started at puberty. In my case I was not diagnosed for years with either of them. In mid 30's I had my last child, my symptoms got much worse I was bedridden 7-10 days a month, bleed most days. I was diagnosed after last child birth with adeno, it was recommended I have a hysto. I declined to, I was offered BC. Which I too do not do well with . So I suffered another 5 yrs, b/c I was scared. I had not been diagnosed with IC yet. At 40 I had a hysto, best thing I ever did. After surgery my gyno said he thought the hysto will not have taken away all my pain b/c he felt I had something else as well, hence the diagnoses of IC. Having the hysto did not make my IC worse. I suggest having it sooner rather than later, they can remove uterus vaginally if uterus is not too big, adeno makes it get bigger.

    Later for other reason I tried BC which I reacted terrible with my IC. I have tried and used bioidendical Hormons without problems.

    I kept my ovaries, which seemed to have just shut down at 50.

    Feel free to Ask ? Or pm if you prefer.

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